Schizophrenia: 3 Moms in the Trenches Podcast

In recent posts, I reviewed two new memoirs from fellow MRQs (Moms who Refuse to Quit) Miriam "Mimi" Feldman and Mindy Greiling. Both memoirs were recently released (unfortunately forced by the pandemic into virtual-only book tours), and are both stellar and unique.

audio podcast or YouTube video

So - we met each other (virtually, of course - what else could we do?) and have teamed up to create a new podcast/youtube show for Moms like us - and also for other caregivers, practitioners, family members, and those (like our sons) who are diagnosed with schizophrenia - if they are in a place to want to hear about our side of the story.

Ben would not care to watch this, I know, as he still lacks insight into his illness (anosognosia) - but our hope is that the content is there for whomever is ready to hear it.

Here is the description:

Three Moms in the Trenches: (East, West, and Mid-US). We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone...and learn. Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”) Miriam Feldman - Artist, Mom, Author "He Came in With It" Mindy Greiling - member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can")

Podcast can be found here:

YouTube  (please subscribe to be informed as each weekly episode comes out!

Thanks!

Five Months a Patient (Psychiatric Unit): Daring to Hope Again

One week from today, Ben will be discharged from the longest hospital stay of his life. Five months. Five months! Believe me, I am grateful. Grateful that he was safe, cared for, and somehow has returned from the abyss of his illness. Again. 

Not gonna lie, though: we’re also very grateful for having had a break from living with him. What a blessed empty nest. No staying up til 3 AM to make sure he takes his meds. (Up until Covid hit, Ben had  worked as a restaurant server, thanks to those meds he hated). No cigarettes on the front porch. No huge messy vegetarian cooking marathons. And, mostly, no tension in the house from secrets kept, delusions hidden, resentments festering. 

How, after nine years of success, did Ben wind up at square one, delusional and certifiable? I can blame Covid-19 (see this earlier post) for the job loss, the structure crumbles, the community scattered, his purpose stolen – but, truthfully, he was teetering on the brink of the rabbit hole even before that. Excessive pot use, self-caused financial stress (he leased a Lexus? Really?), and mostly – mostly – resenting and cheeking the medications that provided the foundation for his ability to function in reality. Every night my husband or I could feel the hatred coming from Ben as we supervised his medication he desperately wanted to not need, all his charm having been used up at work and none left for his family.

But there’s only so much you can do if he backwashes into the water and then swears he didn’t.

We got by. We all squeaked by. Until August 29, 2020. Another night spent in the police station, calling the on-call psychiatrist, watching my son disappear before my eyes. Again. Talk about the worst Déjà Vu ever.

Fast forward, I guess…past more court hearings, renewed conservatorship, Ben’s refusal to go back on the meds that work best for him, awkward zoom calls (no visiting allowed, thanks Covid), paperwork trails to get him back on disability and out of debt. Where are we now? 

He finally seems stable again – but he’s on Haldol, a medication that can have devastating – and permanent – side effects. Also, it doesn’t help much with the negative symptom of schizophrenia, so I’m not a fan. But Ben has refused to do the blood draws required to be on Clozaril. So here we are.  And - so far, so good. 

It seems okay. He called me yesterday – three times, as he needed a favor – and we actually had a conversation: about his bank account (yes, I deposited money so he won’t be overdrawn), his car (repossessed, and he’ll have to declare bankruptcy and start over again), his housing (back to a group home, which has thankfully accepted him), about origami (he taught everyone on the unit how to do his favorite creations, something he recalls from years ago), and even about politics. He is aware that we have a new President, and that in itself is a miracle, since five months ago all we got out him was the occasional grunt and suspicious staring and mumbling to his voices.

When Ben learned that I had taken care of his affairs, he said, “Mom, you’re the queen of the world” – and he meant it to be funny, not a delusion. I have my son back – well partially. As always, I'll take it. Better than nothing.

In one week, he gets placed in a residence with a day program included. He has no car, no job, and will be living a half-hour from us. But it’s better for him, and for us. I hope and pray that he doesn’t walk out the door of that place when the nurse is coming with his medication. It had happened before. And then– back to the psych unit.  The revolving door.

I have my son back – well partially. As always, I'll take it. Better than nothing.

But, for now – we hope. And express thanks to the staff that has kept him safe for five months, the medication that seems to be working, and that there was bed available for him.

Can things fall apart again? Oh, heck yes, you bet they can. But dare we hope?

Absolutely. We dare to hope. No use predicting disaster (then we’d have to go through the emotions twice, and all we’d get is the booby prize of having been “right”. (Ugh) – all we can do is our best to prevent it.

Welcome back, Ben. I’ve missed you. Not the illness – I hate schizophrenia with all of my being. But now that I see glimmers of my son again. Yes. I’ve missed that. 

One step at a time. And avoid the rabbit holes. 

Breakdown: The Right Title for a Much-Needed Book

I've often wondered what treating patients with SMI (Serious Mental Illness) is like for medical professionals. I want to know, too, what the intake process is like for clinicians, and whether they feel as frustrated with the system as we family members do. This book answers these questions, and more.

Through it all, author Lynn Nanos, L.I.C.S.W., shows such concern, knowledge, and caring for people like my son Ben (who is diagnosed with paranoid schizophrenia), that I kept wishing she were on the team treating and caring for Ben right now.

I had to sharpen my pencil several times, I underlined so many facts and observations.

Five Shocking Facts

Five things that either stuck with me or surprised me - and, after nine hospitalizations for my son Ben, I thought I knew it all...

1. Often the "easier-to-manage" psychiatric patients get admitted, instead of those who need the help the most, because they are cheaper and less difficult to manage.  Those admitted include "malingerers" who just want to get off the street for "three hots and a cot" and can fake psychosis.

2. Connecticut (where I live) is one of only three states in the U.S. (along with Maryland and Massachusetts) that do not have laws allowing AOT (Assisted Outpatient Treatment), something that most definitely would benefit my son.

3. Yes, untreated schizophrenia can increase the incidence of violence.  And often, when the voices tell a schizophrenia patient to harm someone, it's someone they know...and usually love.

4. Regarding RLC's (Recovery Learning Communities, often staffed by "peer specialists who endorse the possibility that signs of psychosis are normal"):  " Researchers found no significant benefits...to help the seriously mentally ill population"- of which my son is one. I live in fear of those who would try to "teach" him to get off his meds. And yet the government allows antipsychiatry to infiltrate programs it runs. (Chapter 18)

5. Why do psychotic people not engage in treatment? Nanos lists 17 reasons, and "stigma" was not among them. She argues (backed up by research) that stigma is overrated as a reason to not seek treatment for the seriously mentally ill. She says not one patient has ever mentioned that as a barrier to seeking help.

Lynn Nanos knows her stuff, truly cares about her cases, and fights for what's right - while fearless in exposing the cracks in the system.Highly recommended reading.

Who's Jerry? Helping a Child Understand Mental Illness

Mommy is acting funny.

Daddy yelled at me for no reason.

Why is  Mommy in the hospital? 

How can a brain be “sick”?

Finally, a picture book for children that addresses the most secret of secrets: my parent  has a mental illness.

We follow little Imani through her confusion, sadness, loss, and adjustment as her mother reacts to her inner voices (one named Jerry), lashes out at her daughter,  goes to the hospital for treatment, and finally returns home, with her illness under control. Through it all, Imani’s father provides support for her. 

if you know a young child who is dealing with this in his or her family, this lovely book is a great place to start. It could be the key to opening the conversation we seldom know how to explain.

"Fix What you Can": Apt Philosophy for Family Mental Health (and book review)

Mindy Greiling and I have many things in common, though we've never met. The biggest shared experience: we both have sons with schizophrenia, and we haven't given up on them. As she says in the epilogue of her new book,  we are "the best mothers we can be."

As any parent knows, good parenting is a shifting balance between stepping in and letting go. When mental illness and substance abuse enter the picture, that balance is ever more precarious. And "happy endings" are, often, only fleeting respites from trauma, until the next chapter begins.

Still, we love.

Still, we hope.

Still, we fight.

Mindy, for much of this memoir, is able to channel much of this fight into her work as Minnesota State Representative - a position she held for twenty years, advocating tirelessly for improvements to the mental health laws in that state. She's received more than eighty awards for her legislative and advocacy work. She has so much good reason to be proud. 

But her son, Jim, still has schizophrenia. That, as we know all too well, sucks. And in this memoir she is raw, real, and informative about her family's journey, and also her work to enact changes in the system.

I highly recommend this memoir for anyone who wants to know more not only about the family experience with schizophrenia, but also why it can be such a long and difficult process to change the legal barriers to getting our loved ones the help they so desperately need (but think they don't).

When  I wrote Ben Behind His Voices almost ten (!!) years ago, there were very few memoirs about the family experience with schizophrenia- and even few that offered any hope or action steps.  Since then, I've seen (and read) quite a few - and this one stands out for its honesty, its perspective (Mindy is the granddaughter of, as well as mother of, someone with schizophrenia), and its knowledge about  advocacy and the way things work in the world of state legislation. 

Mindy Greiling is a fine writer - you'll keep turning the pages. You'll feel less alone, if you share this issue. And you'll get a really accurate ride on the roller coaster of  family experience with "recovery" - what happens after someone with severe mental illness is treated and released? I know this ride all too well - am on it right now, as my son Ben is nearing the end of a three-month hospitalization after nine years of relative success. 

Highly recommended.

Can I Divorce My Child? : How Schizophrenia Splits Families Apart

how - and when - do you let go?

Another hospitalization for Ben, another crisis.

Another round of uncovering the truths behind the life he’d sworn he was managing well (“it’s none of your business, Mom”). In the five weeks since this latest breakdown, I’ve been unraveling and trying to piece together the strands of the web he’d woven, and all that was caught in it: the mess, the mounting debt, his addiction to marijuana, the car damage, the shopping sprees, the lies.

I am not legally responsible for any of this, but of course I am a mother and each day includes hours of work to talk with Social Security, Medicare, debt collectors, lawyers, banks. I am doing what I can to prevent the final collapse of the life he’d struggled - with adolescent (at best) decision making, to create, the nine years he has lived with us (no rent) and complied with our requirement that he take his meds.

Our nest was supposed to be blissfully empty by now. My husband and I have more than earned it. But this is my child…the baby I birthed and nursed, the child who was always so impatient to give you a present, the big brother who was such a role model and friend to his sister, the student who was a John Hopkins scholar in eighth grade.   

How much do you let go before the guilt chokes you? I think I know now. Ben cannot live with us anymore, if he ever gets back to the “almost normal” he had before he took himself off meds. I must turn him over, once again, to “the system” – because I can’t endanger the rest of my family, or my own sanity, anymore.

But how can I divorce my child? Can any parent do that?

Another day, another new book about the toll when schizophrenia strikes the child you love so much. This one is called Fix What You Can: Schizophrenia and a Lawmaker's Fight for Her Son; I will read and review in a later post, but for now let me say that the reviews are stellar, and the twist is that the author Mindy Greiling is also a former legislator in Minnesota whose advocacy has taken the form of changing mental health laws in that state.

I am always a little bit jealous when a new book is released.  Mine continues to sell, but still I envy the excitement of a new memoir – the attention, the possibility, the initial sales. It’s a bit like the feeling when your friend welcomes a new baby - this child could grow up to be a Nobel Prize winner! A famous movie star! The President! – before the messiness of actual life comes in and the blank pages of that child’s life get filled in with actual reality.

But my jealousy right now is more about motherhood than authorship. According to the StarTribune in Minnesota, the author’s son, Jim Greiling,

“ … has passed his 40th birthday because his parents and older sister have been steadfastly behind him, providing emotional, physical and financial support through crisis after crisis. Through suicide attempts, incarceration, chemical dependency relapses, debilitating pharmacological side effects and more, Jim was never alone.”

That was my Ben, too –my 38-year-old son who was working full-time, managing much of his own life (but not his medication), and living with his family – until August 29th of this year.

That’s when it all came tumbling down. Ben was hospitalized for the ninth time – and he is still there.  I shared this story in an earlier post, but the update is:

• He has been court ordered to take meds but is still finding ways to “cheek” them and still talks only to his voices in the hospital (unless he needs toilet paper or something)

• He doesn’t want to see me because he is suspicious of me, and not even sure I am his mother.

• The secrets he kept, the lies he told, the damage and debt he covered up, the evidence of drug use…it all keeps adding up, beyond stress, to the dangerousness of his living with us anymore – no matter how much I love him.

What will happen to him next? How will he feel when/if he finally returns to “reality” to find that he has lost his credit rating, his car, his work (well, Covid-19 was to blame for that) – and, now, the security of living in a nice house in the suburbs with the family that loves him?

Back to a state-run (if we can even manage that) group home? This man who, before Covid economy, was working full time as a restaurant server, earning positive yelp reviews for his service and charm?

He worked so hard. But his main goal in life now is to NOT TAKE MEDS. And that breaks my heart. I am powerless to help him.

How can I divorce my child? Do I endanger myself and the rest of the family to keep a roof over the head of someone who hates me, who undermines me, who might possibly start a fire in the house when using the blow torch we found in his room?

Guilt, shame, reality, hope, love, helplessness, grief…I feel it all, for him and for all of us – my family, all the families who face this in a never-ending cycle of confusion and waiting for the other shoe to drop.

Mindy Grelling’s’ advocacy work took the form of legislation. Mine takes the form of education (I teach, and train others to teach, NAMI’s Family-to-Family class; I do public speaking share our story and advocate for change). We both are authors, and we both are devoted mothers.

But that delicate balance…stepping in vs. letting go. That is the hardest part.

For now, I’ll call my decision a legal separation from Ben. We never lose hope. But boundaries must be set, for there are many in our family whose emotional and physical safety  must be considered.

I hate schizophrenia so much.

Guilt, shame, reality, hope, love, helplessness, grief…I feel it all, for him and for all of us – my family, all the families who face this in a never-ending cycle of confusion and waiting for the other shoe to drop.

Noah's Schizophrenia: Review

Like many memoirs about a mother's experience with her son's schizophrenia, this rang true on so many levels. The love, the shock, the despair, the hope, the searching for support...all of us with loved ones struck by the brain illness called schizophrenia will nod our heads in solidarity - the club we never wanted to be in.

What sets this apart is how the author weaves information and resources into the story: read it to understand acronyms and issues such as AOT, CIT, NAMI, Board and Cares, homelessness, drug use, conservatorships, IMD, Clozapine....a primer for the vast education a family needs to cope and help.

For me, this may not have been the easiest read on this day when my own son's Court Hearing to apply for right to commit and right to medicate is happening in a few hours. I face the difficult decision, as does the author Kartar Diamond so many times in this story, of refusing to let me son move back in with us. Her son Noah cycled through so many forms of alternative housing...what will happen to mine?

In one terrifying and frustrating scene, she shares her thoughts as Noah's symptoms worsen: 

As a small boy, he made a Mother’s Day card that read, “Don’t ever die I love you so much.” Now, 25 years old, suffering from schizophrenia and fueled with crystal meth, he wants to “crush my skull” because I didn’t bring him ten dollars.

Minus the threats, we have been there. As for the threats? Well, you just never know. With treatment, Ben's sweet nature abounds. When he refuses meds? I don't know how long before the voices take over.

The author's son Noah is a talented musician (mine a promising writer, a grim reminder of what this illness steals from the world as well as from the person diagnosed with it and his/her family). This is not sugar-coated at all; it reveals the disparities in the mental health system through the frustrated eyes (and pocketbook) of one mother who loves her son with all her heart, but is left almost helpless by the illness and the system that is supposed to help. It also ends with some hope, and a look at what can happen when the system does work.

I can relate. You, I hope, will too. She searches for "the truth" throughout this book, and all of us hope and pray it can be found.

He Changed His Shirt: When That's the Big Relapse News

Schizophrenia Steals Lives

My son, Ben, is back where he began his diagnosed-schizophrenia journey 17 years ago: in West Hills Behavioral Health Institute, though its real name (not West Hills) has been changed. 

He is the worst I have ever seen him: unresponsive, refusing ADLs (Activities of Daily Living, such as showers), wandering all day talking and gesturing to his voices. The best the nurse can say is that he "isn't causing trouble", and that "today at least he changed his shirt."

This , the best news about a young man who, before Covid-19, was working full-time and training new  servers at his restaurant job.

No, his life wasn't perfect, or even perfectly "normal." but it was a life. And if he didn't always make the best decisions, if lately he seemed lost and distracted, if lately he seemed to find new ways to spit his meds back into the sink...well, he was managing.

It was a life.

But now it's like the past 9 years of stability never happened. So what do I do? 

I clean his room, of course. Since Ben is hospitalized until we can have a hearing to get right to commit and medicate, I have a rare opportunity to snoop, and to clean.

I call junkluggers and pay to have 3 ragged couches and a broken arcade game taken away. I clean out his drawers and closets. I hunt for hints, for information to all the secrets he has been keeping. I find evidence of shopping addiction, more drug use than expected, and all the paperwork that explains his poor financial choices including leasing 2 cars at once. He is deep in debt, all the time saying "Mom, I have it under control."

No big surprise. But informative. As is the mounting evidence that his marijuana use had gone way, way beyond the occasional joint. I have 2 huge plastic bins full of water pipes, bongs, more.

I sort and toss and organize and scrub, preparing my son's room for the life he may never get back. I clean with hope. I clean because it's control. It's the only control I have. It's the only thing I can do for my son now.

But it's the evidence of his hopes and dreams that really get to me. 

From Ben's essay on Shakespeare's Henry IV: Parts I and II, written about seven years ago, a year or so after his 8th hospitalization and release - this time, to our home, where until recently he was thriving. Well, thriving for someone with a severe case of schizophrenia.

In the essay, Ben compares himself to Prince Hal (Henry V), portrayed at first, according to Wikipedia, as " a wayward youth who enjoys the society of petty criminals and wastrels" until he wises up (or grows up, I guess).

Ben says:

Through King Henry's words...I received a deeper understanding of how both my mother and Henry felt as they saw their sons dwindle. When Hal reforms his ways with the promise of honoring his father....he reminds me of how I decided to change my lifestyle upon gaining some insight into my mother's perspective.  

Again and again, I see reminders of the big plans he had for himself...until the world (and especially Covid-19, with its isolation and impact on the restaurant business. pulled the rug out from under his already shaky stance. 

Every time, every night, when we got him to take his meds, I thought to myself: well, we just bought him another 24 hours.  But now that's all gone. I have spent hours on the phone with financial companies, trying to keep his future possible. I defer payments, I cover overdrafts ..and add it to the mounting list of what he "owes" us. 

His room is all ready for him - but he may never come back. Not without a lot of conditions. But I prepare for the best outcome (returned stability), even though I know he might not some back to life this time. Because...motherhood.

And right now, we just have to get him to swallow his medication. 

And change his shirt.

Why Conservatorship? Because it can Salvage – or Save - a Life

Conservators are just the safety net - if you should slip or fall.

Hey, I don’t know Britney Spears. I don’t know her family. I can’t say whether she should be “freed” from her conservatorship prison or not (#freeBritney). Not my business, frankly.

But I can tell you how it works for us – and why .

I can tell you how my son, who just a few mere months ago may have appeared perfectly capable of handling his own affairs, was making some big mistakes-and is now desperately in need of his conservator (me)  to salvage the life he’d so enthusiastically worked to build – before Covid-19 stole his job, his purpose, his sanity.

In the last two days I have:

• Been able to get basic information as to how he is doing in the hospital (not well). Without conservatorship, I’d never have that information – or even know where he is. I couldn’t bring him a couple of T-shirts to change into. I wouldn’t know if my kid is safe.

• Contacted his bank (where he’d opened a secret account) to deposit money to cover his overdraft – for now.

• Kept his Medicare and Medicaid premiums paid.

• Looked into re-applying for social security should he refuse treatment and remain “gravely disabled” – which, right now, he is. Anti-med people? Don’t judge until you see how he is right now. And compare how he was just weeks ago.

• Called the finance company to see if his vehicle lease can be put on hold or something – to avoid the car being repossessed and his credit rating shot.

• Discovered that he’d been covering up a bad financial decision, resulting in lease payments of two expensive cars at once. He’d hidden that from us for awhile, and then it had taken us months to get him to return one of the vehicles. While he’d been employed, he’s covered both payments somehow.

• Paid his credit card minimum (plus a bit) – so this credit rating, too, won’t be shot .

• Contacted unemployment to explain why he can’t file right now – without revealing his illness details (but can’t get anyone on the phone)

This is what conservators do. We catch them when they fall. We let go as much as we can (believe me, the last thing I want is to have to manage my son’s life AT ALL – he is 38 years old – but this illness just totally sucks and steals much of his logic, even when it’s managed by medication) – but if I don’t step in now, my son will not be able to get back the life he created while taking the meds he doesn’t think he needs.

Thank goodness I don’t have to explain anything to his employers. Thank goodness he didn’t exhibit these symptoms while at work, in front of customers. His good reputation is still intact – if he ever agrees to treatment again, and has another chance to get his life back.

Ben is back in the hospital where he was 17 years ago, right after his first breakdown. Ironically, he has the same care team he had then – a social worker and psychiatrist who both remember him, and remember me. This is where I’d first applied for conservatorship of person and estate. This place (called “West Hills” in my book) is filled with flashback scenes for me – visiting Ben, watching him pace the halls and fill notebook after notebook of nonsensical writings; the place where he lauded the value of medication after it helped his brain stop spinning, the pieces of his roiling thoughts falling (mostly) back into place. This is also where he ran from me, after a day in outpatient, because it was time for his meds.

And the flashbacks are all too real again – because right now it’s as if the past 9 years have never happened. Will he come back to life again? Will he work again, drive his hard-earned car again? I don’t know. I don’t even know where he will live, because it won’t be with us if he isn’t agreeing to treatment.

So we live this – once again – one day at a time, and help keep his “managed by treatment” life alive and waiting for him if he ever comes back to us again. For now.

It’s what a good conservator can do. Out of love, pure love. We are the net under the tightrope, should they fall off. We don’t want power. We don’t want to steal their money, or their freedom. We are the salvage team.

Helpless and Heartbroken: Covid-19 Claims Another Victim (My Son's Mental Health)

trying to catch someone before disaster

We finally fell off the tightrope.

Well, my son did. And we were helpless to stop his fall, as we stood there, witness to another mental health victim of Covid-19.

Nine years of being the poster boy for a stable and meaningful life while in treatment for severe schizophrenia, gone in 48 hours. 48 hours. Nine years of careful steps taken toward full-time unemployment, car ownership (of sorts), his own bank account, social activities with friends and family. Nine years of a half-life that we constantly reminded ourselves "was good enough, compared to the alternatives."

Schizophrenia had stolen Ben's life, thrown him into deep muddy waters of chaos and limitations, but he had risen to the surface and we were keeping him afloat by supervising his treatment. Every. Single. Day. He did the rest - earning college credits, working as a restaurant server (a good one, Yelp-worthy), helping out friends - because he had the 4 pillars of stability: treatment, love, purpose, structure.

Gone, all gone. My son is back in the same hospital where he was first treated, 17 years ago, and just as symptomatic. He talks to himself all day. He refuses treatment. He won't talk to us, this child who just one week ago hugged me good morning every day and played on the floor with this little nephew and nieces, who adore him.

His preschool-age nieces and nephew cannot see him like this. They wouldn't recognize their uncle. Sadly, though. it's all too familiar to me, as the pain and grief come rushing back.

No, Ben doesn't have Covid-19 - yet. But the illness caused the economic crisis that cost Ben his job, his purpose, his structure, his livelihood, his sense of self-esteem, his reason to agree to take the meds he thinks he doesn't need.

Unemployment benefits helped - money to at least pay his bills (leased car, credit card, car insurance) and allow some pleasures (take-out food, a new sweatshirt). He was so brave, like a kid consoling himself and saying it doesn't matter when not invited to a birthday party.

But then the benefits were reduced - that $600 per week that has kept most of the unemployed alive since covid pulled the rug out. And Ben's stress escalated - as well as his evident need to control the only thing he still could - refusing to take his medication.

This has happened to many of us, but we can somehow find a way. We dry our tears and turn to logical thought - where can I go? Who can help me? - for at least some answers. But when you have schizophrenia, you don't have the frontal-lobe logic to pull yourself out of a funk. You don't ask for help (because you don't need anyone, or any stupid meds).

My heart hurts. We are in grief. Back to square one, and I am terrified and heartbroken for Ben - and for us.

Getting him out of our home and to the hospital wasn't pretty. The police and EMTs were amazing. And part of me is glad for this "vacation" from his messy room, the greasy stove after he cooks, the cigarette smell that always accompanies him, the daily standoff to get the meds into him.

Yes, I will clean his room, throw out the old empty bottles, the 2 of the 3 ragged couches, the piles of unwearable clothing. I have some control over that, at least. I will do that between my voiceover work, the virtual play I am casting, radio shifts, and helping my daughter with those 3 babies.

But what then? We have 15 days.

15 days. A gift. A burden. A heartbreaking reminder that meds work, but not to cure. Only to stabilize. And my son - all who are like my son - deserve better.

I have no idea what lays ahead. We will move forward, blindly and with love. But the love will lay there, unreturned, while my son lives in his inner world of chaos, back in the place where he was first treated, and a newly-leased car (his pride and joy) sits in our driveway, a reminder of who he used to be - 48 hours ago.

He Came in with It: Book Review

Miriam Feldman's wonderful book will be released tomorrow, and I highly recommend it.

Ever since my book was released (when there were very few memoirs around that dealt with schizophrenia in a child) they now seem to be everywhere.  I have read many of them, and Miriam's memoir stands out as not only relatable (I marked so many passages I almost ran out of ink) but also poetic, artistic, and funny. Miriam is an artist (murals and more) by trade, and her artistry definitely extends to the written word.

Plus she made me laugh out loud - something you wouldn't think you can do when your heart is broken by a devastating, unrelenting illness thrust upon your  beloved child.  But you can, and we must. 

Miriam Feldman takes us through  the facts,  the loneliness, the strength, the love, and the roller coaster of hope and heartbreak.

You will fall in love with her son Nick, and grieve the loss of what might have been...and hope for what might be. As I do every day with my son Ben.

I felt such a kinship with Miriam that I interviewed her (and Robert Kolker, and Laura Pogliano) as part of my "Power of Kinship" conversations. 

Hope you'll read this book!

Beyond Hidden Valley Road: Is There Now More Hope for Schizophrenia?

What a panel! I got to interview 3 schizophrenia experts at once :

Robert Kolker, #1 NYTimes Best-selling author of Hidden Valley Road - also one of the rare non-fiction Oprah book Club selections

Miriam Feldman, author of He Came in with It, publication date July 21

and Laura Pogliano, SARDAA Chapter President and Board member, mom of late son Zaccaria, who was diagnosed with schizophrenia at age 17.

We cover, among other things:

What, if anything, has changed for families dealing with schizophrenia - and what has to happen next to improve the current situation? We touch on: Early Detection and Treatment Need to fund and advance research and find a CURE Four Pillars of Recovery Stigma - is reducing stigma enough? (no!) Schizophrenia as a brain condition, not a psychological issue the sibling experience Hidden Valley Road and the Galvin family current disabled mental health system need for education, NAMI Family-to-Family ...and more.

Schizophrenia: Back in the Spotlight at Last?

Oprah's latest book selection, a new memoir, and HBO's series with Mark Ruffalo - is schizophrenia finally going to get the attention it deserves?

Of all the SMIs (Serious Mental Illnesses) in the news lately, schizophrenia always seems to get the short shrift; it’s like the last mental illness in the closet. 

Unless, of course, there’s a horrific incident of violence. Then the questions about sanity begin...and often finger-pointing at schizophrenia. And then, advocates like me have to bring out the statistics to defend our loved ones: 

• No, schizophrenics are not “more violent”

• No, schizophrenia does not mean “split personality”

• No, it’s not the fault of “bad parenting”.

Currently, this brain illness is back in vogue with three exciting spotlights:

Will these open eyes at last?

Will these open eyes at last?

1. Oprah’s book club selection is Hidden Valley Road by Robert Kolker - about a family with 12 children - 6 of whom developed schizophrenia

2. HBO has begun airing the mini-series based on the wonderful (and devastating) Wally Lamb Novel, I Know This Much Is True.

3. A new memoir is to be released next month:, He Came In With It, by Mimi Feldman

And still, the myths - and lack of attention to research - continue. As fellow author and advocate Feldman points out in her forthcoming book and a recent guest blog post for Pete Earley, 

A huge question looms:

"Why is bringing those with schizophrenia (and other serious mental illnesses) simply to a state of zombie-like compliance considered a success?"

I have my theories, one of which is this: many don’t see people with schizophrenia as save-able, or - worse -  worth saving. Because the illness often robs them of so much besides reality: their joy, their charm, their ability to empathize.

Still, those of us who love someone with this devastating illness, who knew them before it took hold,  can attest to the fact that they are worth saving. They are locked up inside that shell. We love them, and occasionally we see what could be - if only we could find a CURE, not just a management tool.

Right now, as we all struggle with our own kinds of isolation in this covid-19 surreal life, imagine what it might be like to feel that isolated all the time. In the words of Willy Loman in Death of a Salesman, ATTENTION MUST BE PAID.

Let’s hope these three works of art will propel us toward the changes we need to see - and help bring our loved ones with schizophrenia the respect, love, and CURE that they deserve.

We’d give anything to see their joy again.

Corona Virus Quarantine -Will it Reverse Mental Illness Recovery?

As I write this, I realize it has been quite some time since I've posted.

Why? Because things have been remarkably stable --- or maybe we've just finessed our ability to adjust to Ben's illness. It is what it is. There have been a few blips, to be sure, but with fingers crossed every day we buy another 24 hours of relative normalcy by supervising the treatment my son still doesn't - and may not ever - believe he needs.

Ben's recovery (used in the same frame as an addict defines recovery...an ongoing process, one day at a time, with constant awareness and vigilance) has been framed by the four pillars that hold his life up. (Hold all of us up, actually): Treatment, Purpose, Structure. Love/Community.

And then Covid-19 hit. Ben's job (restaurant server, full-time) disappeared - and along with it, 3 of the 4 pillars have toppled or at least been weakened.

Plus - he doesn't understand why he can't see his nieces and nephews. To keep some semblance of sanity, Ben goes out to see some friends in their homes. Germs, risk, but where do we draw the line? Now I must remain socially distant from my own son in our home - even when he offers a hug.

The tightrope walk continues.

I'd be lying if I said we weren't concerned about Ben's precarious mental health, on top of all the shared concerns that have come with coronavirus and quarantine.

And so we wait, watch, and supervise. Just more than usual.

Partnering with Researchers for Brain Awareness Week 2018

"This Brain Awareness Week, we share Randye Kaye’s story – she is a mother of a son affected by schizophrenia. In her search for understanding and raising awareness of mental illness, Randye spoke with Dr Michael Sand, a Medic and Senior Clinical Program Leader CNS at Boehringer Ingelheim to discuss what is important for future brain research. They also shared insights into how they are personally connected to mental illness."

You can view the story here!

Schizophrenia and the Family: Exhausted, Broke, Helpless and Blamed

It isn't easy, loving someone with schizophrenia.

Well, let me rephrase: Loving is easy. Loving is in our soul.

Liking? Sometimes much harder.

Caring for? Protecting? Supporting? Very very hard.

Families Hanging by a Thread

Families who have not abandoned their loved ones with schizophrenia (and many, unsupported and at the ends of their ropes, feel they have no other choice) are left holding so many loose ends it's easy to feel hopelessly tangled up all the time. And that's on a good day. On a bad day? We live in fear.

We fear - for our loved one's life, sometimes for our own lives. And it often feels like there is nowhere to turn.

As for us - well, as of this writing, we're still one of the lucky families. After eight hospitalizations, after seven years in a group home, after homelessness and arrests, our son Ben is back home with us and stable on medication. Well, for today at least. We take it a day at a time, and each day we get that passes without major crisis feels like a gift - a gift that could get ripped away at any time.

I often speak to groups about the Four Pillars of Recovery Success that have enabled Ben to rebuild his life after his periods of psychiatric care: Treatment, Purpose, Structure and Love. Yep: he has a job right now, and a free place to live (with us), and a social life.  Yay. I know what a miracle that is. But, as I've written before, that success is precarious. If one of those pillars should crack, we could be back at Ground Zero in the blink of an eye.

Still one of my most popular posts, here and on HealthyPlace.com , is this one:

Schizophrenia and Parenting: Step In or Let Go?

Though six years have passed since I wrote it, it still gets comments. And in those comments I am reminded of the deep, mournful, and sometimes terrifying challenges families - and parents specifically -  face when schizophrenia moves in.

Here at our home, we face a relapse within 36 hours if Ben refuses to take his meds. I am prepared at any moment to call the police, kick him out, make him homeless, take his car keys away - and possibly face unpredictable consequences if we have to do that - for no family can know what the voices might tell their relative to do. That is our reality. And so we make sure, every single friggin' night, that he takes his medication and doesn't spit it back out. I hate this. It is hard on our freedom, on our work life, on our marriage.

And yet - we love him. So we do it. Because, even though Ben looks at us like we are the enemy during "meds time" - we know that with treatment he has been able to hold down a job, drive a car, play with his baby niece, help a friend.  And that without it - handcuffs, ambulance, hospital, and worse. We've seen it way too many times.

Other families are not so lucky. And tomorrow, we might not be either.

Every day, we face the possibility that Ben might refuse his meds, and the actions we must take if he doesn't.

But wait, there's more.

• There is literally no place for him to go if we have to remove him from our home. Some work success (precarious tho it is) meant that he lost his Social Security support and some medical coverage.

• What if his car is repossessed? It is leased ( he did this without our knowledge) - so guess who helps with payments when he can't do it? (Like when he recently lost his job due to a restaurant closure and can only find work 2 days a week).

• What if he gets sick? What if we lose coverage for his meds?

• What if something happens to us?

Yes, we know we are lucky right now. Ben's schizophrenia is a severe case, and we are lucky he responds both to the medications, and to our house rules that he must take them. I know many families who would love to have such "problems" - as their loved ones are either homeless, in jail, in danger...or no longer here.

Laura Pogliano and Zac

My friend, Laura Pogliano, was a "Fortunate Mother" too, as noted in USA Today. Her son Zac, took his meds, called schizophrenia a "rip-off" but was rebuilding his life too. Like my Ben, Zac wanted independence as the next step - and Laura helped him get to that goal . Like us, her family walked that fine line between stepping in and letting go. But. in his own apartment, Zac passed away in his sleep, possibly due to the heart problems caused by his medications. She mourns him still - and devotes her life to the rest of her family - and to advocacy  with Parents For Care.

But so many - too many - families are living in a world of real fear. Note some of these most recent comments in the HealthyPlace post mentioned earlier:

Now (my son) is out (of the hospital) and has made it clear he still sees me as a dangerous person. I’m terrified that if this delusion is part of his “narrative” that he isn’t able to separate from, that I’ve lost my son and won’t be able to get him back. Our relationship had become remarkable strong since he grew into adulthood and counted him not only as my son but as a friend who I enjoyed spending time with. Now suddenly in a matter of weeks our relationship is shipwrecked and I am, in his eyes, some dark mastermind with a network of spies.

Its an impossible situation and I’m heartbroken at the thought of us becoming estranged over this - Dubya, Feb 2017

I am at a complete loss. I am watching my 20 year old son suffer in jail in a very psychotic state. I feel like he is going to die waiting for a state hospital bed. I am in unbearable pain for him. - Carrie, Feb 2017

My daughter’s violent behavior at times is so disturbing. Like so many others she won’t stay on her meds which causes everyday to be unpredictable. Caseworkes always find her extremely difficult to deal which makes it hard to get any help... Living with her is to the point where i feel I can’t take it anymore… - Carol, 2017

I just finished Googling “how to deal with an older brother with schizophrenia”… I read something about cutting ties eventually for the sake of my own mental health. I also read about putting him in 24/7 care group homes but what if he doesn’t want that? I don’t know what to do. Do I even have an older brother? Does that make sense? When am I speaking to my brother? When am I speaking to the schizophrenia. - Someone from Minnesota, Feb 2017

I’m afraid to be alone in the house with him. He sees a psychiatrist and a therapist once a week, has a therapist come to the house, takes meds (tenuously), but nothing has helped. He’s still aggressive, abusive, isolated, paranoid, delusional, and irrational. He’s threatened us verbally and brandished a knife on several occasions. I love him so much and I’m incredibly sad for him. He talks about suicide almost daily. He is just suffering, always fearful, always sad and miserable. -  Antionette, Feb. 2017

Sadly, these are but a handful of comments - from last month alone. All over the nation, families are left to deal with mental illness alone. Where can they turn? What can we do? what can they do?

This situation demands attention from legislators, researchers, and the judicial system. Families living with mental illness need help - this cannot be swept under the rug. 

What Exactly is Schizophrenia, Anyway?

I often get this question, even years after our family's openness about Ben's mental illness.

Recently I came across this guide from Juno Medical, and it explains it all really well!   

Here is an excerpt:

What is schizophrenia?

The word “schizophrenia” derives from the Greek “skhizein” (to split) and “phrēn” (mind) and indicates a long-term mental disorder that involves cognitive, behavioural, and emotional dysfunctions.

...

What are the symptoms?

Symptoms of schizophrenia usually start between ages 16 and 30 and can be divided into positive, negative, and cognitive ones.

Positive symptoms

Positive symptoms refer to an excess or distortion of normal functions.

Hallucinations: hallucinations can involve all 5 senses (hearing, sight, taste, smell, and touch). Hearing voices is the most common type of hallucination in schizophrenia. People with the disorder hear voices that talk to them about their behaviour, give them commands or threaten them or others.

Delusions: delusions involve having a distorted image of what is happening in the reality. Delusions can be persecutory, where people believe that others are trying to harm them or plotting against them, and delusions of reference, where people think that the environment is directly related to them, e.g. they believe they receive special messages through the TV or the radio.

Disorganized speech and behaviour: the person shows incoherent speech that impairs effective communication as well as difficulties in completing basic day-to-day activities. It also includes bizarre or inappropriate behaviour.

Negative symptoms

Negative symptoms refer to a decrease in socialization, motivation, emotional responsiveness, and movement.

Apathy: the person shows lower interest in activities that used to be part of his or her everyday life, such as work, studies, or sport. Personal hygiene and appearance may also suffer noticeably.

Lack of emotion: patients show diminished affective responsiveness or display inappropriate reaction - or no reaction at all - to either good or bad news. People with schizophrenia may also show anhedonia, which defines an inability to experience pleasure.

Poor social functioning: the person avoids contacts with other people and prefers to spend time alone and isolated.

Cognitive symptoms

Cognitive symptoms involve difficulties with memory and concentration.

Disorganized thoughts: schizophrenia sufferers may demonstrate disorganized thinking and difficulties in expressing thoughts or integrating feelings and behaviour.

Difficulty concentrating: the person displays attention deficit and the inability to gather and process information and make decision out of it.

Poor memory: the person will have trouble keeping recently learned information and use it to carry out a task.

• Hebephrenic schizophrenia: also known as disorganized schizophrenia, this subtype involves incoherent, illogical thoughts and behaviours, and emotional blunting.

want to know more? check it out!

Here is the link to the full guide from Juno Medical.

Many thanks! EDUCATION IS POWER! 

Another Mom's Story of Schizophrenia in Her Son - and Suicide

Book Review: Losing Aaron

I keep thinking of the line in a Phil Ochs (google him:) ) song:

There but for fortune go you or I...

This book is a painful reminder of how fortunate we are to have gotten some extra time with Ben - and of how schizophrenia can happen to any family - rich, poor, educated or not, you name the adjectives. Schizophrenia does not discriminate.

Every family member with courage to share their story about mental illness in a loved one opens the door of understanding just a bit more - and that can help reduce stigma and spark action to help those with mental illness and their families. The author begins with the fact of Aaron's suicide, so we know where this is headed and yet we still root for Aaron - and his Mom, Dad, sister and stepdad - to get the support, education, and understanding needed to change the outcome we know is inevitable.

Alas, that doesn't happen - but Ingrid Blaufarb Hughes opens her heart to us as we share in her confusion, frustration and helplessness in the face of a devastating illness that seems to steal the soul of someone you love.

The pearl in the oyster here is the love the family has for Aaron, and how they do their best to support him in the only ways they know how, even though he consistently refuses the medication that might have changed his life.

I know that love well, as it is what keeps our family going too - and we know we are fortunate that my son Ben follows the "house rules" of taking his medication each day, under our supervision. Any day he could choose not to (as he, like Aaron, doesn't think he needs it) - and we have seen too many times where that would lead us: straight to the hospital, and down the chute to square one again. This book renewed my gratitude for the extra days we have gotten with Ben - days that this author's family was denied. Her pain and love, and her struggle to also live her own life as writer, wife and mother - are honestly told.

It also reminds us of the importance of education, support and acceptance - the earlier the better. Could Aaron have been saved? I don't know. But I know I am so grateful (thank you, NAMI Family-to-Family) for education I got into Ben's illness, which equipped our family to do more to help. It doesn't always "work", but education increases the odds of success.

Tips to Help Connect with Your Family Member with Mental Illness

Tips to Keep in Mind

This is excerpted from Chapter 28 of Ben Behind His Voices.  Along with our story, I share guidelines with information to educate, support and help. Happy Imperfect Holidays!

Randye

The Precarious Jenga Tower of Life with Mental Illness

My son's life is a never-ending game of Jenga, carefully constructed by us all and always in danger of toppling - as pieces are removed by too many players jugging too many variables and way too little foresight and funding.

This month has been challenging. Five years after Ben Behind His Voices was released, we are living inside a constructed existence composed almost entirely of Jenga blocks. Ben has climbed his way to full-time employment as a restaurant server, and has even earned kudos on Yelp.

Recently one of his friends, a young man struggling with mental illness issues and also transgender transition, was reported missing (he has since been found, thank goodness) and his family was frantic. She drove to our home to ask for Ben's help, any info he might share. In the course of our conversation, she revealed that her son had been prescribed medications for his anxiety and depression but had recently refused to take them - and soon after that disappeared. She told Ben that he was an "absolute inspiration" to her son because he takes his meds -  and has held a job he loves for over two years.

What she hadn't realized is this:

Sure, Ben takes his meds - but he still doesn't think he needs them. He is "compliant" because it's a house rule we enforce - by staying up til the wee hours of the morning (Ben helps close the restaurant 5 days a week) to supervise. Could he refuse? Sure. But we would then refuse to allow him to live with us.

I pray we never have to force this issue. We've done it before - it is risky and painful to all - and so Ben knows we mean what we say. But the whole "compliance" situation is a jenga block that always sticks out, just waiting to be pulled from the stack. It's right here on the foundation level. If that one goes, the whole thing topples over.

But even with that foundation intact, each day there are other pieces that hold his life precariously together. This week, four were pulled out --- and we hold our breath, as do so many families in similar circumstances, that the structure can still stand.

• One - Ben lost his Social Security Disability benefits (SSDI) this week. I know - he is working now, and so shouldn't "need" the funding, but he does. Even though he works, he still has a disability. Every day he lives with the threat of hospitalization, and the job loss that would almost certainly follow. His schizophrenia is currently being "managed", yes, but it's still very much there in the decisions he makes when not focused by his work shift. The large payments on his impulsively-leased new car, insurance premiums he now owes to hold onto Medicare, the costs of food and rent...Social Security was helping with those. But it has been pulled from the stack.

• Two - Ben has been supported by a care team - which now (because of funding cuts) has to discharge him from their client roster. He is "doing so well" that they want him transferred to private practice. Help! This rips the safety net right out from under us. Sure, he is doing well now - but what if.....?  It's terrifying to think we'll have nowhere to turn if Ben makes a wrong turn. Right now, the care team has it easy, as we generally handle medication supervision, transportation, doctor appointments, conservator duties, legal help etc. - but the safety net of a care team has been essential to help us when the mental health system (and the paperwork) gets overwhelming or confusing - which is ALL THE TIME.  I don't have the Social Work Masters degree to understand how the benefits work, and what we need to do when emergencies strike. NAMI Family-to-Family taught me a lot, but we can't know it all.

• Three - The restaurant where Ben has been employed for 2 1/2 years has just suddenly closed its doors! This place was not only his income, but also his source of pride, family, and a feeling of normalcy. I worry that the stress will be too much, not to mention the loss of income. What about his car? His life? What about OUR life, and our bank account? We can't afford the losses that keep coming. Ben had paid us rent, but that's gone now with the loss of SSDI. We cover his medicare premiums, his food....and yet we know how many families would be thrilled to have these "problems" -  a family member with schizophrenia who actually takes his meds (albeit reluctantly), has a job to lose, friends to help?

• Four - He had, after a decade on these medications, a white blood cell count that might force a change in meds. Please, no. Nothing else works, trust us. He has tried them all.

But still.

So that's four sticks pulled from the tower.  More threats always loom for families affected by mental illness.

What if......:

• He can't find another job?

• Medical insurance suddenly refuses to cover the only meds that help him?

• He loses his car?

• He gets anxious and upset by the changes and decides to disappear?

• His symptoms act up due to the stress and his potential employers see it? His friends see it? He has been dropped socially many times before after one "weirdness" display.

Help Prevent This, Please!

The one in four families living with mental illness deal daily with their own Jenga towers. We are never "out of the woods." We work every day to shore up that tower and help our loved ones have a life. We and our loved ones needs support, education, funding, research, and a chance to continue to improve. Please keep that coming. We can't handle the short shrift anymore, even if it looks like we can. Bravery often has fear underneath it. Mental illness deserves respect, funding, and a good - and constant - dose of the reality of how important prevention is.